Tag Archives: disability

Love Labour’s Lost

When it came to voting in an election for the very first time, I knew, without a shadow of a doubt, I would vote for Labour. Working class born and bred, nerdy Politics student who knew a Green vote would be wasted in our First Past the Post system, couldn’t bear the Tories, and saw the Lib Dems as an ‘also ran’. Yep, my X was definitely going in Labour’s box.

Much to my joy, Labour won the first election I voted in. I didn’t agree with all of their policies, or even like Blair all that much, but they represented my ideals and my background far more than any of the other parties. So I was happy; my little wonky X had helped them to victory.

Fast forward to last year’s election. I’d spent all day at the hospital, but it was a close run campaign, and I was determined to vote. Dad had to wheel my chair right up to the booth, but I hauled myself up, read the papers repeatedly for the sake of my easily confused tired out brain, and then made another wonky X for Labour.

When the Tories made a coalition with the Lib Dems, I was achingly disappointed; the idea of spending at least four years under their supposedly joint government was almost painful. I knew all too well how the Conservatives treated the working class and those in need like me, and it was plain to see, right from the start, that Nick Clegg and co. just filled the benches. They soon came to be known as the ConDems, and along with my ill and disabled friends, I quickly realised just how apt that moniker was.

It wasn’t long before the ConDems started targeting the sections of society that they perceived to be the easiest: people with disabilities and illnesses, their carers, the elderly, and those who are vulnerable. Cuts in services provided by councils were happening at an alarming rate, the cost of services for those who need them rose dramatically, carers were being put under even greater strain. And then the vicious, painful rhetoric started.

Disabled and ill people have long been treated with contempt and even cruelty, particularly those with invisible illnesses or mental disabilities, but now the government seemed to be encouraging it, fanning the fire of distrust with words, and turning it into hatred.

Making those of us with disabilities and illnesses synonymous with ‘scroungers’, ‘benefit cheats’, the work shy and irresponsible lay-about, draining society with our greed and idleness actively increased disablist content in the media and actions in society: people have been verbally abused, vile notes have been left on cars where Blue Badges are displayed, carers have been spat at, and even worse.

As this situation worsened, Labour supporters like myself were certain Ed Miliband would speak out, defend us, and make clear the distinction between those of us who cannot work – however desperately we want to – and those who won’t work and have no desire to. We hoped that he would support us, and tell the world how we loathe those people who are making careers by faking the pain, trauma and misery we often live with, through no choice of our own.

But Mr Miliband stayed silent, ignoring our plight, and eschewing any hint of Socialism Labour had left – society sharing what it has to ensure everyone is supported.
Then the unthinkable happened; Ed Miliband began to use the same kind of language as the opposition. Truly, I could’ve cried. I, and many others, had been waiting for Labour to oppose what their opponents were saying: to show the discrepancy between the percentage of benefit fraud rates and the percentage of the government cuts; to state that the ATOS tests are ridiculous and give false results, as a man declared “fit for work” died just two weeks later, of the illness he was deemed to be exaggerating; to support carers and explain the millions they are saving the country by not leaving their loved ones to be looked after in care homes or hospitals; to tell the country that we are not scroungers, and that every single healthy person is just an illness or injury away from being in our position.

When Ed Miliband announced Q&A sessions on Twitter, many of us hoped they would be the way to engage him, to garner his support, or just get a 140 character statement that we’re being treated unjustly. Disability campaigners, individuals and on behalf of groups, sent tweet after tweet, hoping one would be seen, as did our Twitter friends with physical or mental health problems. Amongst untold tweets from our “community”, only one garnered a response, which could have come from any ConDem – all tiers of society have to be responsible, from the bottom to the top. The implication that we are at the bottom cut like a surgical scalpel.

Throughout each Q&A, we waited for more responses, thinking that surely we would be acknowledged? But no, favourite muffin flavours and other trivial nonsense was more important than Labour supporters who were desperate for his help.

When I think of the next election, I feel completely lost. The ConDems are marching ever closer to being my worst political nightmare come true, but for the first time ever, I truly do not know if I can bring myself to vote Labour. The party I’ve always supported has no support for me, or my friends. Ed Miliband spends his time parroting whatever David Cameron has said the day before, leaving voters like me to be spat at, to be deprived of our basic daily needs of food, cleanliness, human contact, and to be so fearful for our futures that some become suicidal, or actually take their lives.

I’ve always been adamant that those who have the vote should use it. Especially women, for whom the Suffragettes fought so hard for, and when women around the world are still be kept away from the voting booth, like an underclass.

Now we, who have disabilities and illnesses, are becoming an underclass, and so our ability to vote is a treasure.

But who on earth do we vote for? Labour, Conservatives and Lib Dems have all merged together, creating a three-party system that strikes fear into anyone who cannot care for themselves or needs support. A vote for any other party is a wasted one. So do I not vote at all?

When I stand, wobbling, in the booth at the next election, I have no idea where my wonky X will go. Or if it will go anywhere at all.

Thanks to you, Mr Miliband, I’m another love Labour’s lost.

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On board the Crazy Train

Before I write update you all, I want and need to say a huge, heartfelt thank you to every one of you who has given me support, shown love, shared kind words, sent me marvellous messages, and helped to keep me going. It has meant a great deal to me, and has helped me to raise a smile on the darkest of days. I’m lucky that anyone gives their time to my ramblings, but that you do, that’s more luck than I deserve.

Enough soppiness? Okay, I’ll fill you all in.

On Tuesday morning I felt very anxious; I wanted to go back to the GP because I wanted more help, but I was terrified I would be disbelieved or, at the other end of the spectrum, be told I would have to be admitted to a psychiatric unit.

When I was called by the doctor, I asked Mum to come in with me, and she followed on behind me, stopping only to hand my repeat prescription. As the door between waiting room and doctors’ rooms slipped shut, and my GP lead me on, the idea of being taken away to a secure unit flashed in my head, making my stomach lurch. Mere moments later, Mum was beside me, and I reminded myself not to overreact – that scenario was wildly unlikely!

Super Mum was silent, but prepared with tissue in hand for almost certain boo-hooing. The GP asked why I was there, and I told her all that had happened recently. I said that the fluoxetine had helped me, but for the past few months, I felt that I had been slipping backwards – crying, mood swings, manic phases. I said that I no longer needed an upper, I needed something to make me stable, and that through research and the testimony of a very reliable friend, I had come to believe Lithium was the best of the mood stabilising drugs.

I had been teary, and needed to take deep breaths, but the deluge of tears Mum and I had both expected stayed away.

GP said what I had been expecting – my psychological needs were now outside of her range of experience and real understanding. I silently steeled myself for “admission to a psychiatric unit”, but, like the tears, it didn’t come. Phew!

She said she would refer me to the Community Mental Health Clinic, which isn’t far away at all. Doctor looked at doubling my dose of Fluoxetine while I waited for my appointment, but decided not to as Floxy + Gabapentin can = seizures. And I could do without that right now.

Doctor said she will tell them that my case is somewhat unusual with EB etc. I think she thinks EB is the main cause of my Bipolar, and I really don’t think it is. But maybe I’ll make discoveries with the psychiatrist at the clinic (who will, I believe, prescribe the best meds for me after a meeting or two). It will also very likely speed up my referral (GP said about two weeks, when I’m told eight is the average for “urgent” cases). Maybe people will think I’m abusing EB to jump the queue, but I don’t really care. Like EB, my BD affects my parents massively, especially my mum, whom I adore.

The sooner I’m not making her cry, or taking up hours of her time as she tries to talk her sobbing wreck of a daughter round, or trying to keep up with my manic projects so that I don’t hurt myself, the better our whole families lives will be.

I’m past being shy of having Bipolar, I’m past being shy that I need medication to get my life back. Because I’m not shy to say I can’t help having BP anymore than I can help having EB, and I Camt so anything about one, I can actively fight the other.

I’m not just fighting for me, I’m fighting for my family and my friends, who have supported and loved me all the way. I’m pulling my gloves on and walking into the ring…

Round One is about to start….

Mel xxx

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(What’s the story?) Morning Gory

Last night I was in agony with my foot, to the extent that I genuinely didn’t know what to do with myself. It was happening within a depressive phase of my life with Bipolar, which made it all the worse. You can catch up with it by reading my last post.

Well, I took extra sleeping meds (within the dosage I’m allowed), to enable me to sleep through the pain. So tired I couldn’t sit up straight, me and the Black Dog curled up in bed, and fell in to the deepest sleep I’ve ever had.

I woke up this morning, hearing Bess (my darling little dog) having her fur cut. Honestly, you’d think a wolverine was being tortured, not a a little terrier having her tummy trimmed whilst being cuddled and kissed! I laid in bed, opiate lozenge in my mouth, and waited for Mum to come and help me up. I felt wide awake, and decided to sit on the landing floor to cuddle the now cashmere soft Bess.

All was fine – I was smooched on the nose, and I held her in my lap – then I tried to get up. Because I felt awake, I forgot that the sleeping meds (of which I’d had more than I usually do) are also muscle relaxants. I’d put my wobbling down to the state of my feet, but oh how wrong I was.

I turned to kneel and push myself up…one arm gave out from under me, I grabbed the chair in front of me – forgetting in my panic that it’s a swivel chair – it spun around, my legs collapsed, I unintentionally flipped over and ended up with my head hanging over the top stair.

Poor Mum was stricken. Luckily, as it was ending, Dad came back in from the shops and ran up to help. I sat up, knowing instantly that I’d badly hurt my left elbow, which is already constantly painful, and my left knee, which is my best behaved one.

I was quick to reassure Mum that I was fine – explaining what had happened with the bloody chair and my rubber limbs! There were a few tears as the shock hit me, but then Bess appeared.

She has no understanding of EB. To her, I’m just one of the pack; I give her treats, I play with her when I can, and I give extraordinarily good tummy tickles. She knows when I’m sad, and she’ll stand on my lap, with her paws around my shoulders to cuddle me. Her big liquorice nose snuffling in my ear, her soft whiskers on my cheek.

But as I sat, booing on the floor, she rolled her most treasured possession under my leg…a soggy, grubby, chewed up tennis ball. She wanted me, or Mum, or Dad, to play. And that stopped the tears, because I had to laugh. In the midst of packing for hospital and panicking over what I’d just done, there was a little furry ray of sunshine at our feet. Bessie’s tennis ball is her ecstasy, and she wanted me to have it too.

She was jet black as a pup, but now her Yorkie daddy’s genes have come through, and she’s mostly silvery grey (with a ginger ‘tache!). My little, scruffy Grey Dog chased away the big Black Dog today. He’ll sneak back, but Bess will be there, shining with love and silliness, and she’ll see him off again.

Yesterday, I felt lucky, but I wanted to give my parents their freedom. Today I feel that, once again, something saved me. Something kept me here. Being agnostic, I won’t rule anything out. But I feel that if I keep being saved, there must be something I’m meant to do. I just need to find out what it is.

So until the Black Dog comes crawling back, I’ll have a good think about what I’m here for. Playing with Bess is definitely one of my purposes 🙂

M xxx

My Bessie Bear, chilling in my room, with the tennis ball!

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About last night…

In around thirteen hours, I’ll be heading off to hospital. It might be earlier, if things get worse, but I hope not.

Really, I should be in St Thomas’ A&E now, but there won’t a doctor there who will know what to do with me, and I really don’t want to spend another night in the Clinical Decisions unit. One night, three years ago, with an elderly man snoring louder than I thought was possible, and a heroin addict throwing tables around because he wanted Methadone, Dad awkwardly asleep in an upright chair, Mum curled up like a cat at the end of my trolley. No, not again.

So in about eight and a half hours, Mum will call the specialist nurse and tell her I need to be admitted. She will start the arduous task of securing a bed for me to collapse on to, and the Specialist Registrar of my Dermatologist will ask Microbiology which antibiotic needs to be pumped into my bloodstream, to force the infection out. I’ll be begging them for every pain killer I can have.

I feel like a failure. I’ve always had a sky high pain threshold, eschewing pain relief in favour of distracting myself. Music and a good book are my preferred methods. But I have never known pain like this, and even my strong opiate pain killers aren’t really helping. The fact that I’ve cried with the pain has been my parents’ indication of how much pain I’m in.

My right foot has myriad ulcerated wounds on it, and some are on areas that were already severely nerve-damaged. Imagine how an ulcer on your tongue feels… Now imagine that ulcer is four inches long… And it has siblings, all over you tongue, cheeks, roof of your mouth and gums… Now imagine someone is pouring vinegar over them, and they are so deep you can sink your teeth right into them. You’re getting close to how this foot feels.

On top of that, my Bipolar Disorder has reared it’s head. It didn’t occur to me last week, when I was a cheery and getting lots and lots done, that I was in a manic phase. I just wanted to think I was happy. Well, I obviously wasn’t, because the Black Dog has its paws wrapped around me in a vice like grip. I was managing to tell it to shush and be a good doggy when I was with people, or chatting on line, but tonight it broke free.

To be clear, I don’t think I’m unlucky, or that I have an awful life. I am so grateful for everyone I have who, for whatever reason, love or like me. I have a home, food, clothes, luxuries like the Internet and my iPad. I have healthcare, and some health. I could have a far worse disability or illness. I do thank my lucky stars, for all the good things I have, and all the bad things I don’t. So what I said wasn’t for my benefit…

I sent a tweet in which I said I thought I should let the infection take over, finish me off, and then my lovely, wonderful parents could have their freedom. And I meant it. It wasn’t a cry for attention or help, it wasn’t that I wanted my ego massaged and to be told how great I am, it was, is, what I felt/feel is best. My mum was sat in front of me, still wading through my dressing change, and I wanted better for her. I wanted her not to have to worry, not to sleep on mattresses by my hospital bed. I wanted she and my dad to go to bed at the same time, to travel and have fun together. Without a bandaged burden to consider.

But, for some reason, they won’t let me go. And I can’t go without their help.

So you’re all stuck with me for now.

I wanted to say a huge thank you to everyone who sent kind and concerned tweets, who offered support and prayers (I might be a non-believer, but I do appreciate people taking the time and having hearts open enough to pray for me. I’m sending love and good wishes back to you). And though I don’t believe any of the nice things you said, and probably never will all the time I’m a Bipolar Bear, I feel incredibly lucky to have made such fabulous friends via Twitter.

I hope you all know how lovely your hearts and souls are.

With love and thanks
M xxxx

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Work shy? Work deprived!

In a blog post I wrote last week, I suggested that the government give monetary incentives to businesses who enable disabled and/or ill people to work, whether by providing equipment for them to work from home, or by adapting their offices. A lot of companies in cities (at least I know this to be true in London) are required to ensure that any new buildings – of which there are many – must be accessible to the disabled. But those in old buildings, particularly small, local firms, might not have the means to fund adaptations. Necessary adaptions might not be viable in each building, of course, but this is hypothetical. Or what if the government provided grants or loans to people who could set up their own business and work from home? If a loan is given, it could be paid back over a fair period, with either base rate interest, or no interest at all. I’m sure that, within a year, the government would be recompensed by a decrease in claims for ESA, IB, IS, JSA etc.

Let me be clear, I do not think any disabled or ill person should be forced into work. I do think, however, that I have too many ill or disabled friends whose talents are going to waste. Some are great at PR, some would be fantastic researchers, others are writers, or techies, or bakers and artists. Their wealth of experience, and their want to make use of it are being left to rot just because their bodies or minds are keeping them out of the standard work place. It makes me angry to think that there are less skilled and less qualified able bodied people getting jobs above my disabled/ill friends, purely down to their lack of wheelchair, absence of surgical scars, or “clean” mental health record.

So, I would really be interested to hear what adaptations you would need to work in an office, or what kinds of equipment you would need to work at home (if, like me, your health/body/mind wouldn’t suit an office). For example, screen magnifying equipment, voice recognition software, aids to allow you to work comfortably from your bed, ramps or a wheelchair lift to access an office, a specialist pen that you can hold, or adapted kitchen appliances, a mobility scooter or powerchair. If you need a medical treatment, but are being denied it by your GP or consultant, that would be interesting, too. We all know about the “Postcode Lottery”.

Costs would be great, but not essential. I’ve never been able to go to work, but I know that so many of you have been pushed and forced out of your jobs, by your health and/or by ignorant bosses and co-workers. Equally, if you’ve never been able to work, but know what access adaptations or equipment you would need to go to work, do tell us.

Please do contribute your needs and/or experiences. The government might not want to listen to us, but we can make our voices heard. Even if you post anonymously, please do give us your story. Doubters and skeptics ask us what we would do instead of these cuts – well, let’s give them something to think about!

Mel x

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Here comes the hurricane

It’s 6.04am, and I’ve been awake for about two hours. I’m laying here in my bed, listening to David Ford (“So close your eyes and sleep” – I wish) and writing this in the hope that I’ll suddenly overload my desperately tired brain until it gives in and switches to standby. My legs, thanks to twenty-five years of nerve damage in my feet and as much joint damage in my knees, and despite making me pump large doses of Gabapentin – supposedly meant to make my extremities behave – will not stay still. They jolt, shake, compel me to wave them around, pound them against the pile of pillows beneath them, cycle them in thin air and pace silently around my less than spacious bedroom. I once read some know-it-all stating that “Restless Leg Syndrome was invented by drug companies to encourage idiots to buy placebos”. Right now, I would like to aim one of my involuntary kicks at his bollocks.

Okay, maybe, as Mr Ford is quietly singing into my ear, I should “cheer up, you miserable fuck”, but some days – especially in the early hours – the frustrations of being ill and disabled are harder to bear.

As I lay here, yawning and fidgeting, I have Philip Davies MP on my mind. He and his ilk have been making women and men writhe and scream, cry out and sigh in their beds for years now. Purely out of disgust, fear, stress and desperation. We know that this government, and so many others, will “sell out our kids for a tank full of gas…let the economy crash”, to keep the working classes, the poor, the ill and the vulnerable in their places. Right at the very bottom of society.

Mr Davies thinks that, to give myself a chance of employment, I should agree to work for less than the minimum wage. Maybe he is right that, wrongly, a potential employer would choose a less experienced or skilled but able-bodied person over me. And to be honest, right now, I wouldn’t blame them; as I’ve written before, I’m hardly a desirable employee because of the way my body plays tricks. But there are so many ill and disabled people who are, and whose expertise and skills are going to waste. Why not give incentives, if that’s what it takes, to businesses who enable disabled people to work, whether in the office or at home? Over the course of a single year, that expenditure would surely be counter-balanced by a reduction in benefit claims. I have disabled and ill friends who could start their own business, to be run from home, if they were leant a start up grant, to be paid back over a fair period, with base rate or no interest. No bank will give a benefit claimant a loan, but they aren’t vilifying us. We might not function – physically and/or mentally – the way we want to, but we are people, and we deserve the same rights as the rest of the population. So, Mr Philips, “will you just laugh and say I’ve got it wrong? Will you tell me what the fuck is going on?”

Every day we hear another story of another calamitous cock-up by ATOS. How hard is it to understand that putting people with serious health problems under a huge amount of pressure and stress will only make them worse? It’s easy to imagine them saying “heart problems? Let’s give you a cardiac arrest! Epilepsy? We want to see you fitting on the floor! Emphysema? Cough up half a lung for us! Then we’ll believe you”. Of course, we need to do what we can to ensure that the system isn’t abused; no truly ill or disabled person wants to see some idle cretin making a career out of the lives we never wanted, but not at the expense of the vast majority of people who do need help. How can these “tests” by ATOS be defended when people with late stage cancer are being told to return to work? It’s becoming clearer by the day that “‘This train was armed for collision” because “‘clever’ men know all that and all this and they will talk and they will talk, but they don’t fucking listen”.

Oh, Mr Cameron, “what a model of Christian behaviour, preach on with the message of ‘go fuck thy neighbour'”. Let’s be honest, we all expected this from the Tories, but having been kicked in the stomachs by the Lib Dems, Labour are coming to spit on us as we lay on the ground, coughing up blood. You see, “I believe lots of those calling the shots have no respect for the rights that we’re given….and I believe lies cost God knows how many lives, while some rich people made more money”.

Dear readers, “I wouldn’t have it all easy, so come on, let the hard times begin. Let’s kick through the hole in the wall of the mess that we’re in”.

“This is a call to arms”. Come and fight with us.

I’m off to get some sleep…if I’m lucky.

(Words in quotation marks are lyrics written by David Ford)

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A Father’s Day toast to my dad

Today is my dad’s 28th Father’s Day. He has two human children, and one four-legged, furry one called Bessie. He says he loves us all equally (!!!), but us humans know who is top dog!

I often think that dads of disabled children are overlooked, as mums are more often than not the primary care givers (to able bodied children, too). My dad often says that he doesn’t do enough for me, but that isn’t true at all. As my consultant once observed, he is one of the special ones, and that’s an understatement!

A while ago, we were discussing the issues of parenting with disabled kids. I said, truthfully, I would much rather have EB and my parents than have neither. My dad said that, though he wishes he hadn’t passed on his EB gene, he would “selfishly” always choose to have me with it than not have me at all. He said that being my dad has made him a better man, and he couldn’t imagine life without me. I’m crying again just writing that!

It has been far from easy at times, our relationship. Mostly because we are so much alike and have been known to lock horns over such trivial things as carpets (yes, you read that right). But we’ve always loved each other, and, now I’m older, we are great friends. Apart from the odd tiff! We go to football matches, the occasional gig, watch films together and quote The Simpsons at each other (“One of you ate cans, one of you ate health food. How you solved crimes, I’ll never know”). We both love cars, and I’ve got into cricket and am beginning to not hate golf, whilst sneaking my favourite bands on to his iPod, turning Dad into a David Ford, Weezer and Muse fan (he’ll never come around to NIN or ATR, sadly), and he saves Johnny Depp et al interviews for me from newspapers. I’ve realised that, though he might not remember the courses I studied at uni, and has at times added or subtracted a year to my age, he knows me far better than I knew. He can read my moods, knows how to calm me down or cheer me up, and he always helps me to rationalise my fears. Dad understands my decisions when no one else does, and can tell I need a cuddle from the way I’m sitting. He drives me here and there so that I can have a social life, drops my friends home so they don’t have to walk or catch the bus, has sat with me while I get tattooed, bought home weird things that he knows I’ll like, and sat outside Brixton Academy until 11pm even though he’ll be up at 5am for work.

Dad is still there when I’m in hospital, and comes to sit with me in Recovery after I have surgery. He doesn’t mind if I vomit blood over him, and protects me when I’m too drowsy or in too much pain to speak. When I have a blistered eye and am screaming in agony, he still lays on my bed with me and cuddles me until the Morphine kicks in. Dad knows when I’m a bipolar bear, and let’s me cry snottily on his shoulder until I have no more tears. He’s even been stuck in two lifts – one directly after the other in Great Ormond Street – with me on the theatre trolley, two panicked nurses and an almost hysterical porter. All he cared about was me being okay (including telling said porter that if he tried to climb on my trolley again – to get out of the celling hatch! – there would be trouble) and getting to my bed as soon as possible. He’s taken me and Mum to Brighton, even though he hates shopping, so that I can have a nice day after having surgery.

Dad has believed in me when I haven’t, slept in chairs on hospital wards and in A&E departments to be there for me and Mum, had more days off of work (even though he is self-employed, won’t get paid and we’ll be short of money) to be with us than I can count. He’s run from the City to Lewisham when I dislocated my knee to get to me when the trains were stopped, driven me home from hospital at 10pm because I was desperate to sleep in my own bed. Dad has chased our guinea pigs around the garden and been scratched to bits, cleaned bird cages and tortoise houses so that we could have pets. And he agreed to having Bess because she made me happy after months of ill-health (I was 21 when we got her!).

Dad has always given me the encouragement to keep my spirit going every day, and walked a mile in the snow and ice to get my medicines to keep my body going. He has driven across London to get my pain killers and sat in pharmacies for hours to wait for them, just so I can sit comfortably.

He is currently renovating an antique desk and chair, so that I can have my dream place to write, overlooking the garden, even though kneeling on the floor damages his skin.

All of these things, and so many more, make my dad the best I could ever ask for. You might not change my dressings, or know how to measure out my medicines, but you’ve loved me all my life. That’s the most important thing of all. I’m incredibly lucky to have my dad in my life, but luckiest of all that my dad is you xx

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My dad feeding a two day old me.

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Fit for nothing, but good for something!

Once again, the media – in all of its many guises – is getting its knickers in a twist about us layabout disabled scroungers, refusing to work and laughing at the saps who do. The Daily Mail even reported that people have been awarded Incapacity Benefit purely because they have “blisters”! How ludicrous, eh? I mean, it’s not like having blisters could affect your daily life, or leave you dependent on your family and carers, permanently disfigure you or carry off nearly thirty of your friends, or… Oh…wait a minute….

I’m not in the habit of feeling sorry for myself, and I’ve never thought “why me?”, but when these stories hit the press, I can’t help but curse my body for being useless in so many ways. You see, until a few months ago, I thought that maybe this year would be the one where I would find a job in an office that could accommodate me and my needs. Then I started a personal project in earnest, and the reality of the situation my body has put me in really hit home.

Having been given such a lot of help and support by DEBRA UK over the years, I wanted to give something back, other than giving talks and doing interviews. Not that those things don’t help or have their merits, but I wanted to do something more. When I a) became more involved with my burgeoning love of vintage clothes et cetera, and b) realised that finishing my Masters degree was becoming increasingly unfeasible, I decided the time had come to organise my very own fundraising event for DEBRA. How hard could it be? A few phone calls, a few emails, maybe some letters and hey presto! a event is ready to be enjoyed by all. Now, only a few months on, my naivety astounds me, and it makes me realise how much I’d been denying the true impact EB has on my life.

Firstly, making phone calls: I can only hold the phone with my right hand, the thumb of which repeatedly blisters and then becomes raw. Holding the phone either aggravates the blister, or causes the dressing to ride up and leaves the phone handset covered in wound “ick” (technical term there!). That would be lovely in an office, wouldn’t it?! Then there’s my mouth, which, when blistered, causes me to sound like the Elephant Man. Try phoning a company for a donation when what they hear is “El-oh. Ahm or-ha-ni-in ah fuh-ray-in uh-ven”, and that takes an age to say. If those two aren’t a problem, there are always the oesophageal spasms which suddenly take hold, leaving me gasping for breathe and rigid with pain, unable to speak. Or, there’s just the absolute fatigue that comes with chronic illnesses. Thus, my marvellous mum has done the majority of the ‘phoning around for me, including several hours when I was exhausted on my hospital bed and imbibing opioid pain killers. Are you a business owner who wants to employ a twenty-five year old and her mum to do one job? If so, we’re your women!

Emails aren’t without their difficulty, either. Having deep ulcers at the tops of my thighs makes sitting upright very painful for me, and so I have to lean to either side alternately. Try typing on a laptop, which is balanced on your hip and making you very hot, with your osteoporotic spine twisted around and see how much you get done. That’s if my eyes aren’t blistered, or the brain fog isn’t so dense that I can’t remember how to explain my own disease. If anyone knows a company where sending an email saying “I’ll get back to you when my bum calms down” is acceptable, please let me know!

Arranging meetings is like something out of Challenge Anneka (look it up, kids). I can’t imagine important meetings at a work place being deferred because I’m having to lay with my legs in the air to ease the pain, or because I’m having my oesophagus stretched again, or have a Colitis flare-up (wherein my mum has taken phone calls and passed messages through the bathroom door). I could only do that with my event because I’m organising it with friends who understand my situation, and know that things can change at a moments notice with me. It is far easier to find friends who accept the “EB permitting” caveat than it is a job or employers.

There is also the issue that the vast majority of the organising of the fundraiser has been done either at my home or from hospital rooms whilst I await surgeries, usually with me in bed (mine or one at St Thomas’ Hospital) wearing my pyjamas. I also send many of my emails during dressing changes, even though the distracting pain can cause errors in my messages, or late at night when my discomfort is keeping me awake.

I’m sure this sounds terribly depressing and negative, yet despite all I have said here, the continuing experience of pulling this event together hasn’t been a horrible one. Vastly because it has proven to me that the majority of people are not just good, but kind and generous beyond my imagination. So many people, especially those I have met via Twitter, have put their hearts into helping me and my friends to help DEBRA. And I have made friends, wonderful ones, because of this; friends who I had never met until they heard about my event, but who have given so much time and love to it. There are independent crafters and jewellery makers who have taken the time and effort to make pieces for us to raffle, small businesses who are giving to us even though we are in austere times, and who have pledged more support than I could have dreamed of. A Forties style singing trio, who emailed and asked if they could play for us for free (then thanked us for saying yes!), and bloggers who have offered to write about it – including The Broken of Britain’s Lisa J. Ellwood, even though she has tons going on and should be resting! – sharing their expertise and readership with us.

I’ve also encountered several emails and tweets with messages like “I know it’s not as bad as EB, but I have…”, with revelations of what people are living with. For the record, the severity of one illness doesn’t negate the difficulties another person is experiencing, but it has widened my circle of “differently abled” friends in the best way – not purely because we have health problems in common, but because we have shared interests.

While this project has shone a spotlight on my limitations, it has emphasised knowledge my heart has been trying to convince my brain of for some time:

1) Though I may not be fit for work, or good for employment, I am good for something. I just need to be able to pander to my body when it demands attention – which I couldn’t do in normal employment. Having a disability does not mean that I cannot contribute, it just means I can’t contribute in the way the majority of the media has decided I should.

2) Britain is not broken, but full of wonderful people, in all classes, ages, races, religions, jobs and bodies – the only thing that is broken is the view the government has of the people it should be serving. The minority of the “bad” people is so small, it’s laughable that the government and media waste their time working themselves into a frenzy over them.

So I dedicate this to all of the amazing people I now know – you haven’t just helped DEBRA, you’ve helped me, too.

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The Brain Fog

I think I’m the only disabled person I know who doesn’t refer to themselves as a Spoonie. It’s not that I have anything against the term, and I can understand why people do use it, it’s just that I never have. Probably because I’m too lazy to explain the concept to people, tending instead to say “I’m in constant pain and my body is working harder than most, both of which make me very tired”. Subtext – I’m not lazy, and I would love to have more energy, so please take your judgement elsewhere!

The term Spoonie hadn’t even come to my attention until I joined Twitter, and started speaking to other disabled and ill people about in less than fully functioning bodies. I’d always had contact with other EBers, but if we discussed our health at all, it was always specific to EB and it’s complications (blistered eyes, blocked oesophagus etc). By speaking to my Twitter pals, especially those linked to The Broken of Britain, I started to understand life with a disability more than I ever had before. And though I don’t call myself a Spoonie, one term took a figurative leap off of the screen and shouted “Yes! I actually exist!” – the Spoonie brain fog (search for #brainfog for evidence).

I don’t remember having the brain fog until the end of my first year at university, though I’m sure I had phases of it before that time (my brain has done a fine job of editing my long term memory into snapshots from the past twenty-four years). I know I’m lucky to have gone that long before it hit me properly, but when it did, it hit hard. My renown loquaciousness abandoned me the instant I tried to write essays, leaving me slumped over the keyboard and close to tears, struggling to recall the sentence I had formed in my head ten seconds ago. It didn’t occur to me that it was to do with the fatigue of living with a disability, and so I looked for causes for it; in the process I found a major hormone imbalance and was eventually diagnosed with long-term bipolar disorder, but the medications for each of those problems failed to clear the fuzziness in my head. So the sense of relief and belonging I felt when I saw that term, and that hash tag used amongst my Twitter friends, was almost palpable. It wasn’t a failure in concentration on my part, it wasn’t stupidity, or a willingness to let my perspicacity slide away from me, it was the result of living in a body that has to work its metaphorical socks off just to keep going every day. It sounds awfully self-pitying to explain all of the trappings associated with ones health problems or disability, and so more often than not, we don’t. People around us see the surface, but they don’t see the frantic paddling our bodies are doing beneath it. When you’re born with a disability or illness as I was, it isn’t any worse than developing one, it’s just maybe more difficult to understand what is usual and what isn’t, as there is no ‘life before’ to use as a point of reference. Though I wish none of my friends were ill or disabled, having their experiences to learn from has been a huge help to me.

After two short spells in hospital recently, I was checking my emails and realised that I had no idea what the ones from my The Broken of Britain cohorts were referring to, and yet I knew I should know. It’s a sign of how easy it to throw a brain that is surrounded by the Spoonie brain fog off course – two days away from my emails, and I might as well have been living in a cave for a year for all of the insight I had. But although it still frustrates me, and although I still haven’t really accepted that this feeling befuddlement isn’t going to leave if I shake my head hard enough, I feel much easier now I can email TBoB team back, as I did last week, and say “I’m out of the loop”. And they know exactly why that is, and they pull me straight back in.

NB: I wrote this after five false starts and lots of irritated tutting and cursing!

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Mother’s Day? Same as all the others

It feels like an age since I’ve blogged here, but equipped with my new iPad, I’m now more able to write in comfort. So I’m back to blogging!

I’ve just finished making my Mother’s Day card, as Mummy Jelly (as she is known to all on Twitter!) requested a homemade one this year. I have a severe lack of artistic talent, so were talking little more than stick figures drawn in felt pen, but I did write her a poem, so it’s not all bad.

To make up for my lack of skill, I used photos of my mum and me from over the years; me aged at ten months, six years, and twenty-three years (taken last May). And it made me think about how every year, Mother’s Day is really no different to any other for my mum. I can’t make her breakfast in bed and, even before opening her cards and gifts, she will put my morning blob of ointment in my eyes, then measure out and administer my medications. Then she will help me wash and dress, get me a drink, cook my Sunday lunch, liquidise it…the list goes on.

I hoped that we would have some help by now, as we’ve been looking for a carer to come in for a few hours a week, but so far we’ve had no luck. And even when we do, they couldn’t provide the nigh on twenty-four hour care my mum does.

The pain and discomfort of my disability and my illness can (for the most part) be managed, with pain relief and strength of mind and character, so if it only impacted on me, I wouldn’t hate EB so much. But I despise the fact that it means my mum is always a carer, never just a mum, a wife, or most importantly, a woman. She always has to take me and my needs into consideration, not even painting her fingernails in case it flakes into my wounds, or wearing rings in case they harbour infections. And even when I tell her I’m fine, and force her out of the house to meet her friends, I know she worries. Though I do smile when she comes home saying “I saw a woman pushing her daughter in a wheelchair in Marks and Spencer, and I missed you!”.

Though I sometimes wish I hadn’t been born with EB – I never enjoy it, but mostly I just accept it for what it is – I never wish that I hadn’t been born to my parents. I would always choose to have them and EB over having neither.

Every day I am thankful beyond expression for every single thing my mum does for me, but in Mother’s Day it really hits hard. That’s why I’m sending love and thanks not just to my mum, but to every mum around the world who is also a carer. It’s a tiring, often lonely job, and it is only going to get harder in the face if the government cuts in the UK. I’m one of the lucky ones who is able to actually put my arms around my mum and give her my thanks and love, but many daughters and sons can’t do that.

So while all mums are amazing, please spare a thought for carer mums tomorrow. They won’t have time to think of themselves.

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